I'm new here

Hi everyone

I was diagnosed with GCA April 2015 . I'm currently on30mg of prednisolone as I had a flare up 2 wks ago. I was down to 15mg and that seems to be as low as I can get to so far without symptoms reaffirming. I've been on two different immune suppressants that didn't agree with me and am now on cyclophosamide infusions , so fingers crossed this will work so I can reduce steroids!

This site is so helpful as I don't feel alone with my symptoms as so many people have never heard of this disease

Thank you

10 Replies

  • I agree this is a great place for all of us to share. I am pretty new myself but feel emotionally so much better for having found this place. 😺

    I have found that doing the dead slow method has been helpful in reducing..

    Welcome and will see you around. 🌹

  • Hi

    Interesting to read your post.

    I was diagnosed with GCA in May 2016. Recently had a flare, much worse that originally, after trying to get below 20 mg Prednisolone. At present on 50 mg, which does not seem to last a full 24 hours. Progress is in the right direction but extremely slow compared with the initial onset.

    I would interested to learn what the 'two different immune suppressants' are that have been prescribed?

  • If you are in the US try to get on TCZ. It's new. It makes sense to do it when you are on high doses of prednisone. I am down to 10 mg and was oftered this drug but turned it down. There are many side effects to taking steroid sparing drugs. I too started on prednisones in July 2015. I started on 40 mg and after a month 30. And September I had a relapse and went back to 40. I then reduced only 5 mg a month . Now at 10 I will try 1 mg if my bloodwork is OK . Have had several side effects which include diabetes that's under control without medication and herpes which requires medication when I get outbreaks. Skin is paperthin and I bruise badly. I wake up with large and small purpura. All in all I can't complain. If I had to do it again I would probably try the TCZ. For now I will just continue to reduce slowly and hope that my adrenals will kick in if and when I get to 7.5 Hope my little story helps you to be patient.

  • Hi Nethyman,

    Your original reduction was probably too fast which is why you had the flare. Unfortunately, the next time around does seem to be more difficult. However you must remember that it's not a race to get to the lowest dose; more like a juggling act to get to the lowest dose that still keeps your inflammation under control. That's the key - controlling the symptoms until the GCA decides to go on its own accord. Mine took the best part of 4years after diagnosis - in total about 5and a half years from 1st symptoms. Some manage less, but not a lot!

    With regard to your dose not lasting 24hrs, it's not recommended in GCA to split your dose - some with PMR can - so perhaps you could take yours either last thing at night, that would help early mornings if that's when your problems arise, so long as the Pred doesn't give you sleep problems, or maybe put alarm on for about 4am, take your dose, and then have another couple of hours to allow Pred to start working.

  • Methotrexate at first and then aziathiaprone but they started affecting my liver

    Now on cyclophosamide. I have had three infusions of this and reduced to 15mg of prednisolone and the symptoms started again, so rheumatologist said I probably need another three infusions and see how it goes from there

  • Hi, I'm in a similar position, having been diagnosed with GCA February 2015, and never any lower than 15 mg of pred. Currently on 30 after a flare. Never heard of cyclophosamide; I'm seeing the consultant on Monday so I'll ask him about it.

  • Cyclophosphamide isn't routinely used for GCA although it is used in some other forms of large vessel vasculitis.

    I imagine your flare was caused by trying to force a reduction - either reducing too fast or to too low a dose. To have got to 15mg in under 18 months is not actually that bad - a very large proportion of patients need up to 4 to 6 years to get off pred and flares are very common in the first 18 months. Of all the people I know in 3 forums with GCA only one has been able to get off pred in 2 years - whatever the doctors try to tell you about GCA and PMR taking 2 years to go away. The rest have been in the 4 to 7 year range but there are several who have got off pred even after that long.

  • Hi ceathrua I started on 20mg pred in feb 2015 first diagnosed with PMR and was fine until I start reducing, was at 12.5 mg pred when I developed jaw pain bad headaches, and was admitted to hospital, my dose was increased to 60mg they did a positive biopsy was in for 4 days felt really we leaving, but next day I developed these unbearable headaches, so I was back at hospital and they didn't want to increase my dose so prescribed pain killers which didn't work then sight went in right eye, but it returned, I had 3 episodes of this which was so frightening, my dose was increased to 80mg, I'm down to 6mg but thigh pains have come back in last 7 weeks and CRP and ESR have gone up slightly, what kind of flares did you have? I agree this is a great site as you can't talk to anyone else as no one understands it. Take care

  • Wow

    reading these posts with so fast reductions. It took me nearly 9 months to get from 60mg to 20mg and then once I was there, - yes a flare - back to 60mg, then within two weeks down to 40mg and then another couple of months, reducing by 5 mg at a time, till I got back down to 20mg. It then took another 4 years before remission and I also had another flare at the 18 month mark - back to 40 mg again and it took longer to get back down to 15mg and then a long slow haul. But I had more kowledge by that time.

    I was offered steroid sparing agents, but refused (a very personal decision). I just thought, OK pred has x amount of side effects, steroid sparing agents have x side effects why add more side effects - body had enough to cope with - but as I said, very personal decision.

    Like PMRpro, I only know 2 people who went into remission at 2 years and one of them then got PMR three years later. Remainder have been 4 onwards. Me, 5 years with GCA and now into 7th year of remission.

  • My GCA started in March 2015 and was started on 30 mgs which worked like magic. Have had flare once since hen due to pneumonia, raised Meds and cam down to 10. As this appears to because sticking point, I am staying on 10 for at least a couple of months... watch this space...

You may also like...